1 (edited by carlos Sat, 09 Aug 2014 10:54:50)

Topic: Time for my experience and help

Hi everybody from Spain;

First of all congratulations for this site.For me it has been very useful from the last august and now it´s time to describe my experience.
My mom is 74 years old very healthy and strong woman without any health problems during her life before this. She has had a very aggressive surgery on October 13th to remove a klatskin tumor type IIIb for 8 hours. To achieve this the surgeon had to remove liver left side and rebuild some artery/vain. As doctor said portal vain and artery were involved. He could remove all “macroscopic” tumor. The bad thing is that he had to remove two positive lymph nodes too and for this reason the prognosis was not good in long term.
Anyway, let me explain you from the beginning:
After a routinely blood test as every year in the last January APL/APT/GGT parameters appeared extremely high (10 times). Her personal doctor told her for another test 3 month later (now, in perspective, I can´t understand this gap). In this second test (May) decreased just a little bit. Then in June she had a ultrasound scan where they saw a bile duct dilatation. One month later she had an scanner and when we went for the results radiologist told us that it was possible that the hipodense damage  found ( 25x25 mm) could be cholangiocarcinoma.
After this they sent to her to the general hospital in our city (Bilbao, basque counry) to the hepatobiliary surgery department. There, doctors did her some additional tests during next month (august, September), ultrasound endoscopy , MRI and another scanner in order to a possible surgery. Here they saw some possible vascular invasion. All of this while she did a normal life without any symptoms at all.
But at the same time I had knowledge, from another big hospital 50 km far away, that they had more experience in this disease(liver transplant…)Finally we decided to go there for surgery taking with us all tests and images. In fact surgeon told us that this surgery couldn´t have been done in the first hospital. I said goodbye to my mom at 9 o’clock in the surgery area door  and at 12 o´clock surgeon stopped to inform us that he found more than expected from images. He told us that there were two possibilities (I´ll never forget these minutes)
1-Finish surgery without any action and in 48 hours at home. Time left between 6 months and one year.
2-Go on with surgery trying to remove all the tumor but with some risks because vascular invasion and because of two positive lymph nodes maybe prognosis was not different from the first choice but if it was ok always is better election.
We told him for second option and god bless him and at 17 o´clock he told us that what he wants to do he did it.
After some new blood test, ultrasound and scan in the following days last Thursday she returned home until JUST nine days. Doctor told me that because of good evolution it was better continue with the recovery at home.
Now she try to do something but in few minutes she feel tired and prefers to stay in bed. Despite taking a painkiller pillow every 8 hours she has pain in the surgery area and for this reason she can´t sleep and nights make it very long. In addition she begins to feel sad and depressive seeing the impossibility of returning to a normal life at least for now.Not much appetite either

So, I´d like to know your opinion and ask for advices in this situation.

Thank you very much for your help;

Carlos

Re: Time for my experience and help

Hi Carlos,

Welcome to the site, although I am sorry that you have to be here. I am glad that the site has been of help to you so I hope that you will stick around as you will get a load of support and help from everyone here. And your english seems excellent to me!

My dad was diagnosed last year and his CC was inoperable so I have no experience of surgery of any kind so I cant help you with your specific question, but I'm certain someone will be here soon who can help you. I know my dad, like your mum had many sleepless nights and it does indeed make for a long night. He was prescribed sleeping tablets, Zopiclone which sometimes helped him but not all the time. Have you or you mum spoke to your doctor about the pain just now? My dad also gets very tired quite easily now and also spends a lot of time in bed.

My best wishes to you and your mum.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Time for my experience and help

Carlos,

I forgot to say, you can use the search forum function and the top of the page to look for posts from others members who have posted about their experiences regarding surgery and the after effects etc as that may be of some use to you.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Time for my experience and help

Thanks for your quick answer Gavin.

I think in the hospital she was taking sleep pills for some days.But now, at home she was just prescribed painkiller(nolotil).She returned home two days ago and in that moment when I ask doctor about pain he answered that it was normal.Maybe"nolotil" is not enough strong.I

Re: Time for my experience and help

Hi Carlos,

I know all of this is a lot to take in and deal with and take care of your mum at the same time. At least in coming here you are alongside others who are in the same situation as yourself. It may indeed be the case that this nolotin are not strong enough for your mum. I know when my dad came home from the hospital he was only on paracetamol which was then changed to solpadols, 6 a day then upped to 8 a day recently. I'm sure that someone else who knows more about surgery will be able to offer more insight into the pain aspect of this than I can. But if I was in your shoes then I would look to speak to the doctor again to see if there are other options to help your mum with the pain.

Also, as your mum is in pain then this is probably affecting her ability to sleep at nights which also will probably not do her any good with regard to her mood and feeling sad and down. My dad has also gone through these feelings and has felt better once he has been able to get some sleep and get his pain under control.

I know you will do a great job in taking the best care possible for your mum and I wish you both my very best wishes.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Time for my experience and help

Hello Carlos and welcome to our world. One of very caring and knowledgeable people. You have come to the right place. It sounds as though you have done everything that should have been done right down to switching hospitals. Your mom is going to be tired for a long time, it was a huge surgery. I agree with Gavin that the sleepless nights do make you depressed and slow the healing. I would definitely ask the doctor if you can try something else for pain and sleep.  Moms appetite will take some time also to return to normal. And by the way we don't put time limits on anything. We have some members who refused surgery and after "a  time limit" are still around. We like to say you are not born with an expiration date on the bottom of your feet. You sound like a wonderful son and your mom is very lucky to have you. Wishing mom better nights!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Hi Gavin, I totally agree with you. The pain is the key in this stage and it is very important get it under control in my opinion.
I said my mom to go to the hospital emergency right now but she prefer waiting until monday and see how the evolution is.

I appreciate your comments very much because i feel really alone in this nightmare.

Re: Time for my experience and help

Hi Lainy and thanks for your response.

I knew from this site that the surgery is the only option of cure.
As i said above after opening, experienced surgeon was of the opinion to go on with.Then, to be honest i didn

Re: Time for my experience and help

You are so right Carlos. You have to be strong enough and know that your decision is the right one.  We just heard from a friend who used the same surgeon Teddy had for his Whipple. The surgeon knew we were friends and he told them the story  of when he opened Teddy up 4 years ago for the 8 hour Whipple surgery> He said he opened him, turned to his Resident physician and said, What would you do?" The resident said "I would close him up, he is 73 and will never survive this." About 2 hours in to the surgery he again asked the Resident, "what would you do now?" The resident said I would still close him up and let him just be, what ever time he has left." Our surgeon said, "Oh yeah? Watch me." So much depends on the luck of the draw when it comes to any doctor. You and us have just been very lucky! I do believe if you can get that pain under control, mom will improve a bit faster.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

10 (edited by marions Sat, 24 Oct 2009 13:53:00)

Re: Time for my experience and help

Carlos......pain is associated with recovery from a major surgery such as the one your Mom has undergone but, pain medication should be able to help ease the discomfort and allow her to sleep.  I agree with Lainy and Gavin in that a physician needs to prescribe something stronger then what she is taking presently.  Also, small, frequent walking around the house is really important in order to force the digestive tract to function and of keep the lungs from accumulating fluid.  I am not a doctor but, I am relating back to the care my husband received following his surgery and from what others have shared on this site. Pain medications have a tendency to slow the bowel causing constipation which, in itself can cause much pain.  Your Mom has had an enormous surgery and it will take some time to recover but, with adequate pain medication and her being able to have some sleep I suspect that she will feel much better soon.
Best wishes and please, say "hello" to your Mom. 
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Time for my experience and help

Thanks Marion for your feedback too.

I

Re: Time for my experience and help

Welcome, Carlos!!  I'm sorry you have to be here but in awful times like this, this website is a very comforting place to be.

My very best wishes to you & your mum.

Julia

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Time for my experience and help

Hi Carlos,

Like Gavin, my mom can not have surgery. However when she was first diagnosed she experienced pancreatitis after one of her procedures. It caused extreme pain and took her several weeks in hospital to recover. She did use a sleeping pill to get through the worst days and nights.

She was very depressed when she came home for almost two weeks. I think the combination of being diagnosed with cancer, being in extreme pain for weeks and not sleeping well left her with no reserves. I am happy to say that she did turn the corner and while her prognosis is not great, she is her sweet self again.

I am sending you positive energy from Canada.

Sharon

Re: Time for my experience and help

Julia, Sharon thank you very much too.

it seems that she has slept a little bit better tonight. Anyway, tomorrow I

Re: Time for my experience and help

Dear Carlos,

We are so glad that you found this group! The people here are wonderful and caring, and have so much knowledge and experience.

I had a five-hour surgery for a Klatskin tumor in 2004, and it took me about six weeks to really recover completely. (I was 46 then, younger than your mother.) It's a very serious operation, and it takes time for the body to recover and start to function again.

Your mother's surgery was only two weeks ago, so it's normal that she's experiencing pain and feels weak. I agree that you really need to get stronger painkillers for her. Her body can't heal when she's in pain. Also, it's really good if she can stand up and walk around just a little, as often as she can, and try to walk a little more every day. That really helped me a lot. And she should eat very small amounts (even just a few bites) many times a day.

And tell her that she WILL feel better, much sooner than she thinks. I have had four big surgeries, and the time right afterwards is always so hard because you think you will always feel like that-- weak, tired, and in pain. But our bodies are amazing, and she will feel better every day.

Best wishes to you and your mother!

Kristin

PS Your English is GREAT! (I'm an English teacher.)

Peace, hope, and healing to all!

Re: Time for my experience and help

Kristin, really thank you for your feedback and advices.

I

Re: Time for my experience and help

Good luck with your mum's continued improvement, Carlos.  Tell her we're thinking of her (& of you, too!!)

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Time for my experience and help

Thanks Julia.

I have to say you that the evolution is being positive.


I just came from the phisician.I went alone logically since my mum is not strong enough. I gave him surgeon report and explain him about pain management, pills etc...

Now he has prescribed her two kind of painkillers(every four hours) and sleep pill.He believes that the evolution will be positive in the next weeks if nothing strange happens reaching a life almost the same as before the operation.

According to him, checking surgeon report, another thing will be the dissease evolution in short time(one, two years)

Thanks for your support.
Carlos

Re: Time for my experience and help

Hi Carlos,

Sorry it's a little late but welcome to the board. It looks like you have already discovered how supportive and knoweldgeable everyone on here is. People are so kind and helpful, there will always be someone to answer a question or ask advice from.....

My Dad had a failed liver resection in June 2009, he wasn't as fortunate as your Mum, his cancer had spread so far in to his liver that it was not compatible with life and he died 9 days after surgery without ever coming round from his anaesthetic...

Wishing you and your Mum strength and good wishes as you face the journey ahead.

Katie

Re: Time for my experience and help

Thanks Katie for your words and sorry for your dad.

All you say about this site 100% agree.

Thanks again;
Carlos

Re: Time for my experience and help

Hi Carlos,

I'm glad to hear that you were able to speak to your mums doctor and that he was able to prescribe some different pain killers. Hopefully these will work better than the last ones and help your mum some more. And if she can also get some sleep and not be in so much pain then hopefully that will also help her mood and her recovery.

Best wishes to you both.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Time for my experience and help

Hi Carlos,

I am SO glad that you went to the doctor and got better pain medication for your mother. Once she is sleeping better and feeling more comfortable, her body will recover much faster. I'm sure she is starting to feel better already.

Please keep writing to tell us about her progress, and let us know if there is anything we can do to help you! She is lucky to have such a wonderful son.

Best wishes to both of you--

Kristin

Peace, hope, and healing to all!

Re: Time for my experience and help

Hi Kristin;

As you said my mum

Re: Time for my experience and help

Thank you so much for the good news!  What a relief, yes? Perhaps mom could just sit outside in the fresh air a bit.  Keep that good news coming!! Recovery takes a long, long time and it sounds like she is really trying!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Lainy;

I trust that the good evolution can be mantained and I wish I can enjoy my mother for a reasonable time with a good quality of life.

None deserves this disease, but people as good as my mother in all aspects even less.
Believe me that it has been nearly three months from the initial diagnosis and still can not believe what is happening.

Regards;
Carlos